Sunday, February 22, 2015

This past week, we met with Alex’s support team for his
quarterly meeting. Since he receives state disability services, these meetings
are required every three months to monitor his progress, plan for the upcoming
months, and discuss any concerns that have arisen since the last meeting. For
these meetings, his case manager, behavioral therapist, music therapist, and a
representative from the agency that provides respite care and day programs meet
with us. Essentially, these meetings resemble annual case conferences for
special needs students who have IEP’s.

Because Alex is an emancipated adult; that is, we have
decided not to declare him legally incompetent at this time and are therefore
not his legal guardians, his presence is required at the meetings. As his
parents, Ed and I can advocate for him, but Alex ultimately can make decisions
about his support program. Fortunately, he is quite content with his team of
professionals and the work they are doing with him. Consequently, my main roles
in these regular meetings is to play hostess since they meet in our home and to
help Alex navigate the process, explaining what others are saying as needed and
translating for him when his speech is difficult to understand. With several
people in the room at the same time, he sometimes becomes confused as to
whether a question is addressed to him or not. Sitting beside him, I often
gently tap his leg to let him know that he is being questioned so that he
realizes that he needs to provide an answer. At times, questions are directed
to me, and I try to respond as clearly as possible to provide an accurate
report of Alex’s current state.

To be honest, I felt a little disappointed right after the
meeting concluded. Because Alex has made great progress in the past three
months, adjusting amazingly well to his new computer class and making
significant improvements in his behavior by showing more patience and
flexibility as well as managing his anxiety through coping techniques, I
anticipated that we would simply celebrate his achievements. While his
therapists noted his improvements, they also focused on areas that still need
improvement, namely his tendency to talk too softly, his need to be reminded to
use manners by saying please and thank you, and his need to develop greater independence
in daily living skills. While I value these skills, I’m delighted that he has
overcome two huge hurdles that negatively impacted our lives and led to our
getting services for him in the first place.

When Alex’s behavior plan was first written two and a half
years ago, he desperately needed to improve three areas: physical aggression,
property destruction/mishandling, and inappropriate social behaviors. Thanks to
therapy, medication, and maturation, Alex has learned to handle his anxiety
appropriately so that he doesn’t resort to aggression or throwing things for
attention. This improvement has made our lives so much easier, not worrying
that he might have an all-out meltdown. Also, his behavior improvements have
permitted him to go more places in public because we don’t worry about him
behaving badly. Essentially, our lives have changed so much for the better with
the disappearance of the physical aggression and property destruction that we
could be satisfied with just mastering those two areas.

However, we also know that Alex also needs to improve his
social skills, which his behavior plan defines as not invading other people’s
personal space, including not touching them or their belongings, covering
his mouth when he coughs or sneezes, and not talking too quietly to be heard or not
responding at all. Certainly, as he interacts with more people and goes out
into the community more, these skills will serve him well. Yet, I thought after
he learned to control his angry outbursts, we might enjoy a plateau period
where we just rested a bit, grateful that our lives were finally peaceful.
Instead, the meeting this week reminded me that we need to keep moving forward
to help Alex fulfill his potential. Yes, he is much better than he was, but his
therapists believe that he can continue to get even better and will push him to
improve his social skills until he masters those, too. They reminded me that
“good enough” is selling Alex short because he can be better than that.

As I reflected more on the meeting, I was able to get past
focusing on the weaknesses they discussed and the work we still need to do as
his support team and to hear why they believe he can overcome those issues that
still linger. They describe him as “smart” and “capable”; they see beyond the typical
autism behaviors of social impairment to what he can achieve. Also, I realize
that when he masters all these goals, he will need new ones, and at some point,
he may not need all the support he is currently receiving. As much as I’d like
to rest on the peaceful plateau I imagined, I know that we need to keep moving
onward and upward so that Alex can achieve what he is capable of doing.

Looking back, I can recall various tasks that seemed
unending and perhaps even impossible. We wondered if Alex would ever become
toilet trained, and eventually he did learn to go to the bathroom
independently, which made our lives easier. We wondered if we would ever be
able to have a conversation with him because his language skills were so weak,
and now we can talk with him, despite some lingering speech issues, and find
ourselves amused and amazed by what he tells us. We wondered if we would ever
be able to take him out in public and trust that he would behave himself, and
now we take him someplace nearly every day, not worried that he will misbehave
and enjoy watching how happy it makes him to be out and about in the world.
Consequently, I know now that Alex has great potential, and I need to be
reminded that he can overcome these difficulties with time, patience, and
support.

While I first thought his support team was not fully
appreciating what Alex has accomplished recently, I can now recognize that they
see him more objectively than I can. As his mother, I focus on what he has
done, but his therapists are looking forward to what he can do. For years, Ed
and I were unable to find professionals who could help Alex, and now we are
blessed with a group who not only understand him as he is but also can envision
what he can be with time and intervention. Working with them, we know that we
will move onward and upward, not resting on what we’ve already accomplished,
but knowing that Alex can, indeed, keep improving, master goals, and reach his
full potential.

“Not that I have already obtained all this, or have already
arrived at my goal, but I press on to take hold of that for which Christ Jesus
took hold of me.” Philippians 3:12

Sunday, February 15, 2015

As I have mentioned in previous blog entries, we have tried
to enroll Alex in a good day program for adults with developmental disabilities
for over two years because we wanted him to have the opportunity to socialize
with peers. However, his past behaviors raised red flags for the day program we
felt would be best for him, despite the improvements he has made over time with
medication and behavioral therapy, and they placed him on a long waiting list.
In the meantime, we filled his schedule with music and recreational therapy and
two hours a week of activities with a caregiver who is about his age. Also, Ed
and I have kept Alex busy by taking him to various stores, restaurants,
concerts, and sporting events so that he could engage in typical activities.
Thankfully, this waiting period gave Alex time to learn coping skills for his
anxiety as well as appropriate social skills to use in public.

In December, the day program we had chosen finally had an
opening, but we declined the offer. Even though we had thought this program was
perfect for Alex, we no longer felt that it was right for him. For one
thing, he would have to travel about a half hour each way to get there, and we
didn’t think traveling for an hour every day was a good use of time for him. Also,
the program had grown during the time we were waiting, and we were concerned
that the number of clients and the increased size of the facility would
overwhelm Alex. In addition, Alex’s behavioral therapist and case manager, who
frequently visit this program to see other clients of theirs, agreed with our
decision not to send him there because the program no longer seemed ideal for
him.

Instead, Alex’s case manager had told us of a new, much
smaller day program that opened last spring. Along with the smaller size, the
program appealed to us because their location is less than five minutes away
from our home. After touring the facility, we knew that Alex could thrive
there; however, their director also had concerns about Alex’s past behaviors.
Thanks to the intervention of his behavioral therapist and case manager, they
were able to convince the program director to allow Alex to have a trial period
to see how he would do in that setting and to prove that he has made
significant progress in three years. Knowing Alex’s strengths, his case manager
suggested that he could take a computer class there, and they agreed to enroll
him for an hour once a week to start.

In January, Alex and I met with the young woman who would be
working with Alex and teaching him computer skills. Alex’s behavioral therapist,
who met with her to give a briefing on Alex’s strengths and weaknesses, and I
were both impressed with her warmth and enthusiasm and felt she would work well
with him. So as not to disturb Alex’s afternoon therapy schedule, we decided
that he would go to the day program on Thursday mornings from 10:30-11:30,
which meant that Ed would get him ready in the morning and bring him to the
computer class each week since I’m at work at that time. Even though Alex would
have to tape his beloved The Price Is Right episode and watch it later, he was
eager to go to “computer school.”After waiting for so long to get him into a day program, Ed and I hoped
that Alex would behave himself so that he could continue and wouldn’t be asked
to leave. Fortunately, he has done even better than we could have hoped.

The first week, his teacher assessed his computer skills,
which seemed to be stronger than she thought, as he was able to do all the
tasks she asked of him. She even had him create a flyer for their agency
advertising an upcoming event, and he was able to type all the text correctly
and with her guidance add clip art to illustrate the text. After he finished
all the work, she allowed him to take a break, telling him that he could play
computer games of his choice. However, he apparently did not want to take a
break and preferred to work the entire time, so he simply sat there silently
and waited for her to make other suggestions. I suspect that she didn’t realize
how quickly he would be able to complete the work, and the next week, she had
more planned for him to do.

The second week, an activity that could have thrown Alex for
a loop thankfully did not. When he arrived, they were getting ready to have a
fire drill. After his teacher explained what was going to happen and what Alex
would need to do, he complied with her directions and didn’t seem fazed by the
activity at all. After starting his session by standing out in the cold, Alex
cooperated beautifully with his lesson on spreadsheets, and Ed said that his
behavior was perfect. In addition, she introduced him to the other clients in
the day program, three young men, one of whom commented about Alex, “He’s
really tall.” At the end of the session, his teacher gave him homework in the
form of charts he was to fill out regarding prices for his favorite stocks, and
he happily and faithfully completed this assignment every day until his next
class when he would enter this data on a spreadsheet he created.

The third week, another complication arose at the beginning
of class when his teacher was late because she was working with another client.
Nonetheless, Alex handled this disruption without incident, going ahead and
starting to work on the computer, as she told him to do while he was waiting. Again,
Ed noted that Alex’s behavior could not have been better, even when his teacher
was flustered because she could not get the computer printer to work and had to
make some adjustments to what she had planned. Alex easily accepted the changes
to what she had planned. Moreover, he really liked the homework she gave him
for the next week—tracking the daily weather data for the following week.

Last week, once again Alex calmly adapted to complications
as he and Ed had to drive in a blizzard to get to computer class. As he had in
previous sessions, Alex cooperated and completed his tasks exceptionally well.
Along with his spreadsheet activities, he showed his knowledge of Spanish,
math, and parts of speech as he completed some computer drills on these subject
areas, and his teacher seemed impressed with his skills. Because it was the day
before Valentine’s Day, the other two instructors gave Alex valentines, and one
had prepared a treat bag filled with gluten-free snacks that Alex could have on
his restricted diet, which was especially thoughtful. Also, the other
instructor commented that she always looks forward to Thursdays because she
gets to see Alex. Echoing her kind sentiments, Alex’s instructor told me in an
email last week that he is doing very well and that he is “such a pleasure to
work with.” As parents we couldn’t be prouder of him, and we know that he is
exactly where he is meant to be in this smaller program where he has been able
to shine and to endear himself to the staff who see the good in him.

Although we hope that eventually Alex will be included in
more activities at the day program, we are delighted that he has adapted nicely
in such a short time and pray that he continues to do well. One night as he and
I were talking about his computer class, he enthusiastically told me how much
he liked the class. Then he earnestly asked me if he could still be a
meteorologist or an astronomer, the dream jobs he has talked about since he was
a little boy. I think he put those dreams on hold for a while, and the success
he is having now with his computer class has reminded him of what he would like
to do someday. While I don’t know what the future holds for Alex, I pray that
he will have opportunities like this computer class to develop his skills and
learn from people who bring out the best in him, and perhaps one day he can be
the scientist he aspires to be. As long as he finds joy and fulfillment in whatever
he does, we will be grateful, knowing how far he has come.

“See, the former things have taken place, and new things I
declare; before they spring into being I announce them to you. Sing to the Lord
a new song, His praise from the ends of the earth…” Isaiah 42:9-10

Sunday, February 8, 2015

This week, Huffington Post featured a heartfelt blog entry written
by autism mom Carrie Cariello entitled “I Know What Causes Autism.” [To read
this essay, please click here.] With all the uproar regarding the recent
outbreaks of measles at Disneyland and a Chicago area day care center, this
essay has garnered quite a bit of attention because she addresses the
controversy of vaccines and autism. To summarize, after she lists several
potential causes of autism proposed over the years, she dismisses all of them
“for now,” proclaiming that her son’s autism is genetic: “So, for now, I’m
going to believe that Jack’s autism is because of DNA and RNA and heredity.”
Furthermore, she asserts, “He’s exactly the way he’s supposed to be.” As she
explains, “If I start running around declaring autism an epidemic and
screeching about how we need to find out where it’s coming from and who started
it and how to cure it, well, that sort of contradicts the whole message of
acceptance and tolerance and open-mindedness.” Although I appreciate her candor
in explaining her opinion regarding the cause of autism, I must respectfully
disagree.

Maybe it’s because I’ve been an autism mom more than twice
as long as she has.

Maybe it’s because we have watched Alex struggle with
puberty and hormonal changes, something she probably hasn’t yet experienced
with her son.

Maybe it’s because I’ve had more time to research and
compare notes with other parents whose lives parallel ours.

Maybe it’s because we’ve run tests that have diagnosed mercury
and aluminum poisoning and know that both of those toxic metals exist in
vaccinations.

Maybe it’s because I know that you can love the child
unconditionally but hate the disability passionately yet still be accepting and
tolerant.

Maybe its because I don’t believe that Alex is exactly the
way he’s supposed to be. I believe that autism has robbed him of things typical
people his age enjoy, and I intend to do everything in my power to make sure he
will not always be denied those opportunities.

On Friday, the discussion of the measles outbreaks arose
among a group of my colleagues. One sympathetic friend noted how awful it was
for those tiny babies to have the measles and how miserable they must be. I
thought of how awful it is for children with autism who, unlike the vast
majority of children with measles, don’t get better after a few days. Our
oldest and wisest colleague noted that he had been immunized against both
measles and mumps, but still got both diseases as an adult and questioned the
effectiveness of vaccines. The youngest colleague, who is cocksure about
everything, claimed that he had read “all twelve of the case studies,” and was
certain that vaccines don’t cause autism. Although I was torn between wanting
to slug him or to enlighten him on the autism research I’ve been doing for
twenty years, I decided that either would be a waste of time and energy because
he had already made up his mind, and I left the room.

Immediately following me was my colleague/close
friend/confidante who knows my story well and who knew that I had left without
a word after deciding that “Discretion is the better part of valor.” As the
mother of two small children, she has struggled with the issues of vaccine
safety herself, wondering and worrying if she is doing the right thing, and I
have supported her decisions, just as she has supported mine. For the record,
Alex received all of his childhood immunizations on time according to the CDC
schedule because at that time little was known about possible links between
autism and vaccines and because I believed that was the right thing to do at
the time. Although I don’t know for certain that vaccines caused autism in
Alex, I certainly believe they were a contributing factor for him.
Consequently, I understand the dilemma parents face in deciding whether or not
to vaccinate their children.

As my beloved friend and I discussed the issues of
immunization rationally and respectfully, we came to the same conclusion that
as mothers we want what’s best for our children and pray that we make the right
decisions. As she wisely pointed out, we will love our children no matter what
problems we face. However, we know that life is hard, and we don’t want our
children’s lives to be harder than they need to be. Therein lies the crux of my
drive to find out what causes autism and why I can’t be satisfied until I know
the answer: I don’t want life to be harder than necessary for Alex.

If we can find the cause of autism, then maybe we can find
effective treatments and potential cures. I want people to be as outraged about
the autism epidemic as they clearly are about the measles epidemic so that they
will work harder and faster to help those affected by autism. Moreover, I don’t
believe that this is how God intended Alex to be; I believe that Alex is meant
to be healthy and to live an abundant life. Accepting what is instead of seeking
what can be feels wrong to me, and I have hope that Alex will overcome autism
one day. Until then, I’ll keep searching for the cause of autism so that Alex
and others like him can be healed and so that other families don’t have to
worry that their children will face the struggles those children with autism
have endured. Unlike fellow autism mom Carrie Cariello, I don’t know what
causes autism, and that frustrating uncertainty mightily motivates me to keep
looking for an answer.

“Lead me by Your truth and teach me, for You are the God who
saves me. All day long I put my hope in You.” Psalm 25:5

Sunday, February 1, 2015

Somehow we just know. Maybe it’s the lack of eye contact,
the toe walking, or the hand flapping, or even more likely the way the parent
helps the child navigate a public place, but those of us whose families have
been touched by autism recognize each other almost immediately. Knowing that
staring is hurtful, we watch surreptitiously to confirm our suspicions that
they, like us, belong to the autism club none of us ever wanted to join. If our
understanding gaze is met, we smile and try to convey that we empathize. Often, we do not speak—like our children with autism, we’re not sure what to say in the
situation. Somehow just knowing that we’re not alone comforts us and reassures
us that others are dealing with lives similar to our own.

Other times, the signs are more obvious, and we can connect
beyond the knowing look and sympathetic smile. For example, last summer when
Alex went for his routine blood tests, which he thankfully finds fascinating
and handles amazingly well, the lab technician interacted with him with such
ease and compassion that I suspected she had some first-hand knowledge of
autism. As I noticed an autism awareness ribbon on her identification lanyard,
she told me to ask for her specifically whenever Alex needed blood draws and
explained that she, too, was the mother of a child with autism. Quickly, we
compared notes, discovered several similarities between our children, and felt
a sense of relief to talk with another parent who understood raising a child
with autism.

Similarly, when we took Alex a few months ago to a new
doctor for a check up, I was pleased to observe that the nurse knew how to
engage him and make him feel comfortable. While she spoke to him sweetly, she
never treated him like a child, nor did she act patronizing to him because of his
disability. Once again, I noticed that she was wearing an autism awareness pin
on her identification lanyard, and I asked her about her interest in autism.
She explained that another nurse in the office has a son with autism and gave
all of the nurses autism awareness pins to wear, which I thought was a great
idea. Not only could this autism mom and her co-workers promote autism
awareness, but also by wearing the pins, they immediately identified themselves
as supportive to any families dealing with autism. All of those nurses with
their autism awareness pins demonstrated that their office was a safe place
where parents knew their children with autism would be welcomed and understood.

Other times, we dance around the details before we figure
out our common link of autism. A few months ago, I was talking with my doctor’s
nurse who was checking my blood pressure, and I commented that my blood
pressure was amazingly good, despite the stress of teaching middle school kids
and raising a “high-maintenance” son. Like typical mothers, we chatted briefly
about our sons before discovering that both of our boys are on the autism
spectrum. As in other similar situations, I felt relief to find someone who
truly understands my situation as an autism mom and wanted to share as much
information as possible within a short period of time. Now that she and I know
that bond we share, we will smile knowingly at each other, cognizant of how our
lives parallel.

Last night, we took Alex to Target as a reward for a good
week in which he was cooperative with all of his therapists and us. Happily
looking around at various items in the store, he was delighted to find a
special 80th anniversary edition of Monopoly, his favorite board
game. He was even more delighted when I reminded him that he had Target gift
cards his aunts and uncles had given him for Christmas that he could use if he
wanted to buy the game. Immediately, he decided that he wanted to spend his
gift card on that special edition game and cradled the box in his arms as he
carried it to the checkout counter. As Alex stood patiently waiting to check
out, smiling because he found the special game, I noticed the cashier watching
him. Unlike the mean girls in Burger King who stared and snickered at him last
week, this young woman had a kind way about her. Of course, Alex was oblivious
to her because he was just happy to be getting the game he wanted. She asked
him, “Is this game for you?” and he just smiled. She then told him that he
hoped he liked it, and I prompted him to thank her, which he did quietly.

After she placed the game in a bag and handed it to Alex, he
and Ed moved out of the line and waited by the door for me to pay. Hesitantly the cashier
said to me, “I miss my old job and the special needs kids I worked with.” I
knew she recognized Alex’s autism and wanted to let me know that she understood
him. Addressing the elephant in the room, I told her that he has autism, which
confirmed what she probably suspected, and she told me that her sister has
autism. Once again, members of the autism family club had found each other, and
we nodded knowingly. She asked me about his functioning level, and I explained
that he is verbal, even though he doesn’t talk a lot, and he’s toilet-trained,
so we are fortunate. Then she confided something that made me know why she
wanted to engage me in conversation.

“I’m worried that my ten-month-old baby girl has autism.”
She explained that because her sister has autism and because she has seen signs
in her daughter, such as hand flapping, she has concerns. Listening
sympathetically, I nodded and hoped that her suspicions are wrong. She told me
that she would keep watching her baby and if the signs continued, she would
have her evaluated for autism. Trying to reassure her as the line of customers
behind me reminded me I had little time, I told her that I was sure she was
doing the right things. I also told her that I hoped her suspicions were wrong
and that her baby would be all right, but I also reminded her that because of
having a sister with autism and working with special needs kids, she would know
what to do, and her daughter would be fine. While I hoped I had said the right
things to reassure her, her eyes filled with tears as she smiled and thanked
me.

Once again I realized that Alex has an important role in
life as an ambassador for autism. People recognize his weakness in the
disability, but they also see the strength in his joy and the progress he has
made. Because of him, we have connected with wonderfully compassionate people
who understand what we have faced because they have dealt with similar issues. Although
I wish that none of us had to endure the difficulties autism presents, I’m
thankful for the support we families can give each other as we wait for our
children to be healed.

“And this hope will not lead to disappointment. For we know
how dearly God loves us, because He has given us the Holy Spirit to fill our
hearts with His love.” Romans 5:5

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.